English Professor Makes a Place for Disability

English professor Rachel Adams doesn’t exactly know when or why she became interested in freaks, but when it came time to write her dissertation—later her first book—the topic she chose was freak shows and the American cultural imagination.

Editor's note:

(Editor's note: This article was originally published September 22, 2011. Professor Rachel Adams's memoir Raising Henry: A Memoir of Motherhood, Disability, and Discovery, previously titled Aiming High Enough, has now been released.)

By
Nick Obourn
September 25, 2013

As she progressed in her research, she realized that many of those who once had been labeled freaks would today be considered disabled people due respect and equal rights. Her interest in this marginalized population grew into a broader concern with disability studies, which concerns itself with the social, cultural and political dimensions of disability. It is fairly young as an academic field, having come of age after the 1990 passage of the Americans With Disabilities Act, which outlaws discrimination based on disability. Much like women’s studies or African American studies, disability studies grew out of activism and the personal experience of those who study it. “In the first wave, a lot of the practitioners were either people who were themselves disabled or had some close experience to disability,” said Adams. “As the field has grown and matured, it has been able to make the case that a lot of its core questions about identity, about social justice, about democracy and civil rights, apply to all of us.” Indeed, Adams notes that anyone who lives long enough will likely be disabled. “Disability is something that should be of concern to everyone,” she said. “Much as we know that someday we, or someone we know, could become disabled, deep in our hearts we believe it will never happen to us.” Adams’ scholarship took on new meaning in 2007 when her second son, Henry, was born with Down syndrome. “Suddenly I had to think about how I was going to reconcile my academic life with this tremendous change in my personal life,” she said. “The field of disability studies suddenly became important in a very personal way.” At Columbia, where Adams is a professor of English and Comparative Literature specializing in 19th- and 20th-century American literature, she has put together a three-year project called the Future of Disabilities Studies under the auspices of the Center for the Critical Analysis of Social Difference. In her teaching, Adams has adopted an interdisciplinary approach in her graduate and undergraduate courses in disabilities studies. Students examine film, literature and photography to understand the cultural representations of the disabled. The curriculum might include the Mark Haddon novel The Curious Incident of the Dog in the Night-Time, narrated from the perspective of an autistic teenager; the film Memento, about short-term memory loss; and Diane Arbus’s photographs of freaks and outsiders. Students also study the history of the disability rights movement and the way people with disabilities were treated in earlier times. For the first time this spring, undergraduates will be required to complete 30 hours of service learning at an organization that works with the disabled. Outside the classroom, Adams is completing her memoir, Raising Henry: A Memoir of Motherhood, Disability, and Discovery, an account of the first three years of her son’s life. In contrast to her previous academic work, Adams’s new book is based on her own life. Her son’s birth not only helped her understand the importance of personal narratives in the field of disability studies, but also how being a scholar of disability studies “does little to prepare you to be the parent of a child with disabilities.” “As I lay there in the hospital, none of my many years of training was of much help to me,” she said. “But almost immediately after Henry was born, I started to write. At first it was largely therapeutic, I just didn’t know what else to do. But over time I came to see the writing of the story of Henry and I—how I came to understand his place in our family and the place I wanted to make for him in our world—as my most important intellectual work.”